New Features to Expect in 2018 10.01.2018
It seems like a long time ago now (the holiday season has a way of stretching time in strange ways), but we sent you our newsletter just before the New Year with a sneak peek of our activities for this year.
To recap, we are switching to a monthly email newsletter and weekly Facebook posts — unless you all write in to say ‘No, Thanks’ or if the vitiligo world has very little of substance to report. You will receive regular news on vitiligo research, therapies, products, self-help, Q&A, with a touch of a gossip-celebrity-lifestyle-stuff.
Occasionally we’ll have longer submissions on a specific topic, but that will be an exception to the rule and because the topic merits additional coverage. New products will hopefully be a regular section. We will be listing Vitiligo News contributors at the end of each edition.
Stay tuned for Vitiligo News!
Happy Holidays everyone! 24.12.2017
We wish you a very Happy Holiday season and a peaceful and prosperous New Year. We hope your holidays will be filled with joy and laughter through the New Year. We are so grateful to have people like you in our lives.
Vitiligo News 2018 survey: on making us less unreadable. 16.12.2017
Can you spare one minute to tell us what concerns you most?
We want to be sure that you receive value from your free subscription to Vitiligo News, our Facebook posts, newsletters and other publications.
Asked another way: What is it that we might be able to help you with?
Ultimately, all of our content is for you, so your opinion is incredibly valuable.
So please, take a moment to answer a three-question survey here about the topics you’d like us to focus on by visiting our Facebook page, or following this link: https://tinyurl.com/ybeo2dng
Your input will remain anonymous and would be incredibly valuable to us and vitiligo community.
Casting call in NYC, Dec 10th. 22.11.2017
Looking for models with or without experience of all ages that have vitiligo.
Photoshoot will be held in New York city on Sunday Dec 10th. For inquires, please email at email@example.com
¿Habla Español? Let Us Know. 24.10.2017
Would you prefer to read Vitiligo News in Spanish rather than in English? Let us know.
We are looking into a possibility to translate our monthly newsletters in Spanish - if we get enough requests to justify the additional effort of our small team.
As an example, here are some past issues, translated by Prof. Jorge Luis Perez, President of VITAMIGOS - Cuban Vitiligo Support and Research Group (Holguin, Cuba)
- 25 de agosto de 2017: Esta es la medicina más antigua conocida por el hombre
- 29 de Julio de 2017: Guía de la Chica francesa para el vitíligo
- 27 de mayo de 2017: Cuidado con una celebridad vudú y la avaricia farmacéutica
Win/Win: Take Part In Survey And Earn $75 24.10.2017
This is a quick one: a leading market research company is conducting paid interviews with vitiligo patients and their caregivers aged from 6 to 17 years.
A 45-minute interview will help researchers better understand quality of life of those affected by vitiligo, to develop better treatments and care programs. By the same token, you will earn $75 for sharing your valuable insights!
To earn the honorarium, one must take a 5-minute online screening survey and complete the telephone interview. To see if you qualify, go to this website and use this referral code: VRF1234 (or you may not be rewarded if you don't!)
Interviews are starting today, on October 24th up until November 3rd, 2017 or until space fills up.
The VRF does not receive any renumeration for promoting this study. We are answerable only to our readers and to our own integrity. We keep our independence in the era of corporate lobbying, and we keep our sanity with a sense of humor.
How To Start A Vitiligo Support Group 26.09.2017
Starting a support group takes a lot of time and dedication. The ground work definitely needs to be in place before your first meeting is held. This downloadable guide from Shazaad Games, a VITFriends NY group co-leader, is a prime example of how a peer mediated vitiligo support group meeting should be conducted.
Family Fights for Family 08.09.2017
Gabby is one of those people that lights up a room the second she walks through the doors. Her personality and her smile truly define beauty. More admirably, Gabby kept that confidence through one of the most challenging self-image times of her life: Vitiligo. Continue reading
Registration for Master Class in Hanoi, Vietnam is open now 10.08.2017
XXIV Master Class on Vitiligo and Pigmentary Disorders will be held alongside 3rd Indo China Dermatology Conference and the Annual Scientific Meeting Of Dermatology and Venereology of the VSDV, in collaboration with the World Health Academy Dermatology (WHAD). Details
Master class in Cuba preliminary program 31.07.2017
XXIII Master Class on Vitiligo and Pigmentary Disorders is planned in Havana, Cuba on November 16-18, 2017. This multi-side event will be held in collaboration with INDERCOS and Cuban Vitiligo Support and Research Group, VITAMIGOS. International and national expert speakers will discuss the latest basic research, advances, evidence and guidelines on diagnosis, investigation and management of vitiligo and other pigment cell disorders. Participants will review risk factors in vitiligo, treatment approach to patients of pediatric and adult age, a variety of therapeutic options for vitiligo, including 'traditional medicines.' We will also discuss a common action at the United Nations aimed at improving quality of life of people with dermatological disabilities, and the World Vitiligo Day campaign.
Fellowship grant opportunity up to $80,000 per year. 09.07.2017
US-based organizations with an active dermatology fellowship program are invited to submit a grant proposal before July 14, 2017. The purpose of this external grant is to provide support the continued training of fellows focused on research, up to $80,000 per year for up to two years. Funding will be awarded to the organization, which will select the recipient. Funding must be used primarily as salary support for the selected fellow, and not for overhead, indirect or fringe costs. Details
Clinical trials in @Mount Sinai in NYC. 08.07.2017
Clinical trials for new vitiligo treatment are soon to begin at Department of Dermatology of Icahn School of Medicine at Mount Sinai in New York city. The study would require regular visits to the clinic. Anyone interested shall call directly at 212-241-3288 and ask for Grace Kimmel, MD or visit website for more details.
World Vitiligo Day celebrations in Detroit 25.06.2017
As I write, celebrations are underway all over the world. US national celebrations are themed “Step Up for Vitiligo: A call for Truth, Hope and Change.” The event is led by Dr. Richard Huggins, powered by Lee Thomas and his Clarity Foundation and hosted by the V-Strong Vitiligo Support Group. Also, Prof. Jorge Luis Perez from Holguin has added a distinct Cuban flavor to our large party.
Further south in Brazil - host country of the 2017 World Vitiligo Day HQ - emotions and energy are running satisfyingly high. WVD President Prof. Paulo Cunha and his team of enthusiasts are raising awareness for vitiligo across national TV, social media and on the street.
VRF work @ the United Nations 13.06.2017
Vitiligo, among other several other debilitating skin diseases, is considered as a disability, and World Vitiligo Day is marked on the UN Calendar of Disability Events.
VR Foundation works across the United Nations to uphold the highest standards of the Convention on the Rights of Persons with Disabilities, a landmark international treaty. It is a comprehensive human rights convention and international development tool, and is at the heart of the disability rights movement.
We believe this Convention is a real possibility for people with vitiligo have their existence and rights recognized by official representatives of a huge number of countries. Never before has there been such opportunity within the vitiligo community, and we are currently exploring frameworks and tools available to work for the benefit of people suffering from vitiligo worldwide.
Newsletter mid-May 2017 is on it's way out 16.05.2017
Check out our latest newsletter scheduled for publication today.
Grey hair hint repigmentation strategy in vitiligo 16.05.2017
Researchers from University of Texas Southwestern in Dallas unintentionally discovered the mechanisms that give rise to hair graying and baldness, according to the recent publication in the journal Genes and Development. A parallel research from an international group supported by the VR Foundation developed a novel technique for repigmentation of senescence grey hair. These findings show promise for the development of new therapies for both grey hair and vitiligo.
April's newsletter highlights 27.04.2017
The VRF newsletter is an excellent way to quickly consume news on vitiligo, lifestyle and skincare in general, in an educational and entertaining way. It usually goes out on the last weekend of every month, and occasionally, in the middle of the month, too. We'll challenge you with different points of view on healthcare, and inspire you to learn more about the skin you’re in, and the world around you. There are no animations, videos, or click-baity images to annoy you - it’s just the news and the facts, served up with a healthy of dose sarcasm and a splash of humor.
What you may have missed in the newsletter last month. 02.04.2017
I’m sure you feel there is too much information floating around. And turning this sea of data into anything meaningful on any subject requires more effort than most people’s available time, energy or memory. Not to mention the fact that half of studies you read about in the news are wrong, anyways, - but which one is true?
That's why each month I scour the web to ensure you never miss anything worthwhile on vitiligo health and lifestyle. And I put some great stuff for you in the newsletter, which I’m confident will brighten up your weekend. Here is just a snippet of what you may have missed last month
Hello, this Oscar Heredia. 30.03.2017
It began in my freshmen year of high school during track and field in spring. It started off as a small white spot on my left knuckle. I thought that it was a very cool and unique look. It wasn’t until someone pointed it out with disgust in their voice that I started feeling self-conscious about it. Thus my psychological struggle began.
Financial statements FY2016 are now available online 23.03.2017
Even though most tax-exempt nonprofit organizations like ours do not pay federal taxes, they are required to file annual tax returns with the IRS. This informational reporting return is called a Form 990.
VR Foundation is committed to transparency in financial reporting and make it available online here.
Financial statements of every major vitiligo support organization from the U.S. are also available at Guidestar.org, an organization that compiles information about nonprofits.
VITSAF presents World Vitiligo Day Abuja 2017 15.03.2017
As we are gearing up towards the World Vitiligo Day 2017, the first announcement comes from Nigeria. WVD Abuja 2017 will be a fun filled two part event; A 5-10km hike, and a Purple Tunic Party themed "Difference is Beautiful". Check out VITSAF website for more details.
Funding opportunity for U.S. non-profit organizations 15.03.2017
We want be sure that you are aware of a unique new funding opportunity, with a tight deadline.
Last week, the National Institutes of Health announced a $5M project. It is aimed at US-based organizations interested in helping engage volunteers in the All of Us Research Program, with the ultimate goal of accelerating research and improving health. Read more
Many thanks to the Chief Scientific Director Dr. Igor Korobko 05.03.2017
The VR Foundation Board of Directors today announced the resignation of Igor Korobko, PhD, DSci, who has served as Chief Scientific Director of the organization since it's inception. Dr. Korobko had informed the Board he intended to resign and focus on his academic career at the end of 2016. And he felt that moving up his resignation date to after the AAD Congress in early March of 2017 would allow VRF to complete the ongoing projects and to facilitate VRF’s continuing focus on its broader mission. Continue reading
Meeting with Vitiligo Friends across the country and the world 02.03.2017
A strong and well-funded Vitiligo Center would make a word of difference, as we discussed recently with President of VR Foundation, Mr. Dmitry Aksenov, and VITFriends founder Valarie Molyneaux and Barbara Hamilton in Boston.
A week before, Prof. Agharid El Gamal from Egypt brought together top experts in their fields, governmental officials and even a representative from Vatican at the headquarters of the League Of Arab Nations to find a better way to help people with dermatological disabilities.
Vitiligo Working Group annual meeting set its attendance record this year in Orlando, held one day before the American Academy of Dermatology congress on March 2, 2017.
Newsletter January 2017 28.01.2017
Whether you take care of other people’s skin or your own, I’m sure there’s things you’d like to achieve or do better in 2017. We'll take a look at a few positive ways to reach that next level, debunk common myths and un-healthy advice, find out how fast your skin is aging and talk about prize draw in our monthly newsletter.
Deceptive curcumin, JAK inhibitors and simvastatin 28.01.2017
Don't scramble to get curcumin, simvastatin or JAK inhibitors for vitiligo. There’s always a chance that they will work in some people, and we just haven’t figured out exactly who that is yet. Nature and Dr. John Harris report a cautionary tale of recent clinical trials in our newsletter.
Summary of upcoming online policy changes. 27.01.2017
Since we plugged in Google Analytics in 2012, our web sites served well over 1.2 million users. Over half of our web traffic is now mobile. We survived several nasty cyber attacks. We are now implementing new technologies to better serve and empower vitiligo patients, to create even more change in the community. To that end, we're making some key updates to our policies that we'd like to share with you. The updated Terms of Service will take effect on February 1, 2017. Because many of you are allergic to legalese, here’s a plain English summary for your convenience.
World Vitiligo Day 2017 25.01.2017
As we started preparations for it's seventh year activities, Natasha Pierre shared with us proclamations that Vitiligo Bond has received in support of the World Vitiligo Day in 2016. Signed by 18 US Governors from: Alabama, Colorado, Connecticut, Delaware, Florida, Georgia, Indiana, Louisiana, Maryland, Massachusetts, Michigan, Minnesota, Mississippi, Ohio, New Jersey, North Carolina, South Carolina and West Virginia.
Theme this year is: Step Up for Vitiligo: A Call for Truth, Hope & Change! V-Strong and VITFriends support groups will host the main U.S. event in Detroit on June 23-25, check www.wvddetroit2017.com for details.
Newsletter December 2016: Great memories of the past year. 09.01.2017
It’s a perfect time to reflect on what’s happened in 2016. There’s been some notable achievements - VR Foundation has become a consultative member of the UN ECOSOC and World Vitiligo Day is now on the UN Calendar of disability events! The U.S. Congress is also re-considering the National Vitiligo Control Act. Read more
World Vitiligo Day is now marked on the UN Calendar 08.12.2016
June 25 now marks World Vitiligo Day on the UN Calendar of Disabilities Events! This is a milestone achievement worthy a big celebration. Next stop, recognition by the UN General Assembly. Avanti!
Report and photos from XX Master Class On Vitiligo in Rome 06.12.2016
Nearly 50 representatives of international dermatological societies and support groups, and also healthcare officials and doctors attended the Winter Consensus Conference and Master Class on December 4, 2016. The theme of the meeting was Working Towards Common Actions at the United Nations. Read more
Newsletter November 2016 06.12.2016
Newsletter October 2016 31.10.2016
A monthly dose of good news from VR Foundation was sent out this past weekend. If you missed it, please read our current newsletter issue here .
Breakthrough research in genetics of vitiligo 10.10.2016
In a study published in the Journal Nature Genetics today, Prof. Richard Spritz, MD, Director of the Human Medical Genetics and Genomics Program at the University of Colorado, and a team of international researchers, - including VRF - announced new genetic links to vitiligo. Researchers conducted genome-wide association studies on 4,680 people with vitiligo and 39,586 control cases and found the genes that provide a framework for the genetic architecture and biological mechanisms of vitiligo. They also highlight relationships with other autoimmune diseases and melanoma.
By identifying new genes and specifics of gene regulations, the investigators can highlight and further investigate potential targets for treatment. A better understanding of the causes of vitiligo could also lead to breakthroughs in other conditions, such as: thyroid disease, pernicious anemia, rheumatoid arthritis, type 1 diabetes, Addison's disease and lupus. Read "Genome-wide association studies of autoimmune vitiligo identify 23 new risk loci and highlight key pathways and regulatory variants"
VRF Newsletter September 2016 04.10.2016
In case you missed it, here is our most recent newsletter with Good Reads, Bad Publishers, New Meetings and more
Clinical trials layer disappears from the World Vitiligo Map. 27.09.2016
Thanks to new federal rules, researchers will have to publicly report the results of nearly all clinical trials, including those for drugs and devices that never reach the market. The new rules also require sponsors to update Clinical Trials website about the status of ongoing studies. Currently, some entries languish for years without new information, thus leaving patients and researchers in the dark about whether a trial is still underway. VRF was filling the void with a curated database of all ongoing clinical trials in vitiligo, and projecting results on a separate layer of the World Vitiligo Map. Starting today, we can finally stop this time-consuming and laborious process. There are currently 16 studies on vitiligo listed on ClinicalTrails.gov
Monograph on vitiligo treatments 23.09.2016
was presented at the XXI Master Class in Kazakhstan earlier today. It's a first ever comprehensive book on vitiligo in Kazakh, with translation in Russian and English. More
Alert! Crackdown on predatory scientific journals. 21.09.2016
In the last five years, open-access journals have popped up all over the Internet. Some of these publishers have deceived thousands of young and inexperienced researchers all over the world, costing them millions of dollars—and for many, their reputations. Continue
Throughout entire August, we asked our followers tag us in a picture on social media of their Vitiligo showing on their hands. Seeing all of the hands together in one powerful image represents a strong community and solid support; two things the Vitiligo Research Foundation stands for. Read more
Winnie Harlow: "Whatever is right for you is right. Period." 06.09.2016
Revitalizing the beauty landscape as we know it, 22-year-old supermodel Winnie Harlow has starred in numerous fashion campaigns in the EU and US, magazine spreads, Eminem and Sia's music video for "Guts Over Fear", Beyonce's "Lemonade,"- among many. She also deserves credit for raising vitiligo awareness to the unprecedented height, standing on the shoulders of those celebrities with vitiligo before her, like Michael Jackson or Lee Thomas.
If Winnie could get one message across to everyone in the world, it would be pretty simple: "Regardless of what race, what color, what sex, what nationality, what sexual orientation — regardless of who you are <…> whatever is right for you is right. Period.” This month, Winnie graces the cover of Marie Claire (Mexico) magazine. Read more on Facebook
Fellowships available 29.07.2016
Three fellowships worth about 180,000 USD each spread over three years for research costs and child care are available from Human Frontier Science Program. A candidate who is a national of one of the supporting countries can apply to work in a research institution in any country. The deadline for password registration and initiation of the online application is 11 August 2016.
VRF Board meeting decision and policy update 13.07.2016
We’re winding down our scientific programs to focus on policy-making and education.
This is a unanimous decision made by the VR Foundation Board of Directors, after careful deliberation about how best to serve the vitiligo community. In a way, we are a victim of our own success in transforming the landscape of vitiligo research, awareness and funding.
Our work has profoundly changed the lives of nearly 100 million vitiligo sufferers and their families. But this comes at a cost - in time, money and effort. The increasing range and volume of global activities is overwhelming our small non-profit organization. Something had to give, which is a major reason for withdrawing the scientific programs.
We have achieved far more in the scientific field than we thought possible, but now it’s time to draw back. We must consider what remaining elements of our scientific program should continue, and how to facilitate free access to our data.
You deserve a full explanation. Check out your mailbox for our newsletter this weekend and you will learn where do we go from here.
This is in no way an epilogue for the VRF. It’s simply an announcement of a new chapter in our story.
CEO VR Foundation
World Vitiligo Day 2016 26.06.2016
June 25th is a day of celebration of our lives and our community. The first World Vitiligo Day was held in 2011 and has since become an annual, global event. Over the years, its purpose has broadened to include recognition of the bullying, social neglect, psychological trauma, disability. This year's rally and other events were one of the largest and most exciting in history of the World Vitiligo Day.
World Vitiligo Day 2016 was an upbeat and festive event that drew huge crowds around the world numbering thousands of participants and many more spectators. From Kazakhstan to Italy, India, Kenya, Spain, Cuba, Brazil, Canada and the US people marched the streets and occupied classrooms. Read more
World Vitiligo Pre-Day 2016. 25.06.2016
Just one day to go. World Vitiligo Day 2016 is almost upon us. Here’s some of the major news. Firstly, there’s a big rally taking place in Washington DC. So big, in fact, that we’re having to start on Friday evening to pack everything in! Read more.
Report and photos from the capital of Amazon 13.06.2016
Over 100 participants of XVII Master Class on Vitiligo in Manaus, Brazil explored genetic risk factors in vitiligo, treatment approach to patients of pediatric and adult age, a variety of therapeutic options for vitiligo, including 'traditional medicines' of Amazon tribes. Presentations on melasma, actinic dermatoses and challenging clinical cases enhanced the intensive program. Read more
World Vitiligo Day Rally 2016 in Washington DC 07.06.2016
Vitiligo community in USA is organizing a rally at the Capitol in Washington DC on June 25th. This idea came alive after successful rally at the Massachusetts State House organized by VITFriends from Boston last year. Check out the program here.
VR Foundation is at the United Nations Economic and Social Council 26.05.2016
Our application for membership at United Nations Economic and Social Council (UN ECOSOC) was reviewed earlier this week, and a consultative status was recommended by the Committee on NGOs for approval by ECOSOC. Read more
Quarterly research review: new findings may improve quality of life. 17.05.2016
Our new Quarterly Review covers 59 papers on vitiligo published between October and December 2015. Among other significant findings, take note of that once-a-week treatment with targeted UVB seems to be as efficient as commonly used bi-weekly protocol for repigmentation of vitiligo lesions. Read highlights or download.
Insurance companies rage war on vitiligo 26.04.2016
A non-profit health provider from New York, Emblem Health (including GHI and HIP) is no longer providing reimbursement for vitiligo phototherapy treatments. However, it will consider on a case-by-case basis reimbursement for "excimer laser treatment confined to areas of the face, neck or hands only”, with an additional caveat of a "documented failure of adherent 3-month trial of both: i. high-potency (Class II steroids) ii. Protopic."
CIGNA, a global health insurance provider, is not providing reimbursement for ANY phototherapy for vitiligo (UVB or laser) since 05.15.2015. From CIGNA's unique point of view, "such treatment is considered cosmetic and not medically necessary". Read our FAQ on insurance coverage for vitiligo treatments here.
"What are you hiding?" 20.04.2016
This is the question Bey asks in the trailer for her project Lemonade. Winnie Harlow, the 21-year-old Canadian model and vitiligo celebrity, also known as Chantelle, appears smack dab in the middle of Beyonce's cryptic video, wearing a crown of thorns and a braided updo. Watch it on HBO for an hour on April 23 at 9 p.m. (Update: find a full story on Mashable)
Master Class on Vitiligo and Hypopigmentation in Jakarta 04.04.2016
Just wrapped our master class on vitiligo and hypo pigmentation in Jakarta, Indonesia. Special thanks to Prof. Torello Lotti, Dr. Nurul Alam, Prof. Henri Lim, Prof. Xing-Hua Gao, Prof. Amit Pandya and Yan Valle for excellent presentations on various topics in vitiligo. Details
An official copy of the proposed 'National Vitiligo Control Act' from 1977. 23.03.2016
We have finally obtained an official copy of the H.R.3578 “A Bill to amend the Public Health Service Act to provide for the control of vitiligo” first introduced to 95th Congress by Rep. Mitchell of Maryland et all on February 16, 1977. The Act was cited as the "National Vitiligo Control Act."
This bill to amend the Public Health Act began as H.R. 5465 on March 20, 1975 (not enacted), reintroduced as H.R. 3578 (not passed), but referred to committee as H.R. 3520 all introduced by Representative Parrin Mitchell in the 94th & 95th Congress.
Download your copy.
First academic forum on vitiligo treatments in Hunan, China 16.03.2016
Prof. Torello Lotti was invited to give a keynote presentation on the latest in vitiligo treatments to participants of "2016 First Treatment Of Vitiligo Hunan Academic Forum". Photos
Keep moving on. 07.03.2016
Wrapping up a looong weekend at the annual congress of American Academy of Dermatology in Washington DC.
Volunteers needed for a study in New York and vicinity 15.02.2016
Researchers are looking for both healthy volunteers and persons diagnosed with vitiligo to take part in a study aimed to improve understanding of biology of vitiligo. Details
Five grant opportunities of $60,000 each. 19.01.2016
We spotted a page soliciting applications for L'Oréal USA For Women In Science grant. This fellowship program awards five women postdoctoral scientists annually with grants of $60,000 each. They can be from any specialty, including vitiligo. Deadline: 5th February 2016. Details
Our top events from 2015. 11.01.2016
The beginning of the year is always a great time to reflect on the past year. We want to take this opportunity to share our 2015 highlights from Vitiligo Land.
Results of a quick poll in December 04.01.2016
Last December, we asked you about preferred format of VRF communications. We received 23 votes in 31 days. The majority with 43% votes would stick with a monthly newsletter, while the second largest group with 30,4% votes would prefer a weekly video blog. See full breakdown of your votes here. After some thought, we decided to continue with our monthly newsletter, with a twist. The upcoming issue will launch our monthly vitiligo product reviews, from vitamins and food supplements to camouflage and a new class of cosmeceuticals. Stay tuned!
Pseudocatalase cream launched in Jordan 21.12.2015
Prof. Lotti has delivered lecture on "The role of H2O2 in vitiligo: new data and new treatments" at the presentation of Vitilase, a new product for vitiligo in Jordan. Based on highly active pseudocatalase, this cream helps induce regimentation in conjunction with sunlight exposure or NB-UVB. The retail cost of one tube (65gram) in Jordan is around $65. Shipping costs of up to 4 tubes range between $15 to $27 depending on the destination.
The meeting was organized by the Philadelphia Pharmaceuticals under the leadership of Prof. Dr. Medhat Abdel Malek, MD and attended by over 250 dermatologists coming from 11 countries of the Middle East.
Master Class Schedule in 2016 09.12.2015
We have tentatively scheduled seven international Master Classes on Vitiligo And Pigmentary Disorders in 2016: Jakarta (Indonesia), Manaus (Brazil), Prague (Czech Republic), Goa (India), Shymkent (Kazakhstan), Batumi (Georgia) and Rome (Italy). Details
Quick poll results: 'Cost of vitiligo treatment or camouflage' 08.12.2015
We received 38 answers to the question "What is the approximate cost of your vitiligo treatment and/or camouflage to date?" in 30 days. A detailed breakdown of your feedback is here.
Vitiligo is going mainstream: fashion and video games. 21.11.2015
Only a multi-million fashion conglomerate could afford to challenge taboos on issues like vitiligo and bring them to the mainstream, CNN reports . An insanely popular video game FALLOUT 4 now helps fight vitiligo stigma. In this version, which was sold in 12 million copies in its first 24 hours on the market, characters can have vitiligo to make their unique appearance (YouTube )
Quick Poll Results 07.11.2015
Last month we introduced the Quick Poll feature. These monthly poll questions will focus on important topic for vitiligo research and therapy development. The results from each poll will be available with the launch of subsequent poll and can be viewed at any time on the Quick Poll page.
In our first poll we asked visitors "Which factors contributed to your vitiligo onset?" We received 51 responses during a 23 day period.
Emotional Distress was the leading factor with 37% of the votes, followed by the Physical Skin Damage (22%), Sunburn (14%), Pregnancy or Childbirth (10%), Medication or Vaccination (6%), Hazardous Materials (6%).
Halloween Vitiligo Makeup 31.10.2015
Happy Halloween! Have FUN tonight by getting visual with vitiligo, like Tayma Adra in the photo.
Can you spare a few minutes to help us find cure for vitiligo? 28.10.2015
By taking a little time to fill in this brief questionnaire, you can help us find a cure for vitiligo. Your responses will be part of the clinical data we are gathering to speed up the new therapy development. The survey will take only about five minutes to complete.
Quarterly Vitiligo Review: 53 new papers reviewed. 27.10.2015
Our free quarterly review of the latest in vitiligo research is now available for download. Take note of the comprehensive review of 'alternative medicines' for vitiligo treatment. Start with Highlights or Download now.
Looking for help with translation! 19.10.2015
Looking for help with translation of Vitiligo Patient Questionnaire in Arabic, French, German, Portuguese and Japanese. 30 multiple choice questions, 4 pages long. We'll send three Zanderm camouflage pens ($105 value) as a token of appreciation for your help with each language. Please inquire at firstname.lastname@example.org
VRF will discontinue collaboration with JPD and OMICS Group. 25.09.2015
Vitiligo Research Foundation Board has decided to discontinue it's collaboration with the Journal of Pigmentary Disorders and OMICS Group, effective September 27, 2015. We wish OMICS Group all the best in their future business endeavors that would no longer include use of logo, names or references to VR Foundation, it's Board Members or Executives.
Our office will be closed on Friday. 24.09.2015
Pope Francis, the spiritual leader of 1.2 billion Catholics, arrives in New York today to use its powers to heal the 'open wounds' of our planet, tainted with hatred, poverty, greed and pollution. His Holiness will speak at the United Nations on Friday morning, zip across the city to 9/11 Memorial, then on to Central Park where he will be greeted by 80,000 observers who won tickets at the lottery. His final event in the city is an evening Mass for 20,000 people just across the street from our office, at the Madison Square Garden. Due to extensive security measures around the building and anticipated traffic delays across the city, we'll be closed tomorrow and re-open on Monday, September 29.
Open Call For Chapters 19.09.2015
for "Vitiligo Handbook: Treatment Protocols and Tools For Clinicians." The purpose of this book is to provide a comprehensive guide to vitiligo management in a private practice or clinic, with the emphasis on applicability. All proceeds from this publication will be used to advance vitiligo research and raise awareness. Details
Winnie Harlow and 10-Year-Old Aspiring Model With Vitiligo on the show today. 17.09.2015
Model Winnie Harlow has been an inspiration to aspiring model April Star for years, and they meet live for the first time on “The Real.” Watch as the stunning models shed light on their skin condition and talk about breaking down beauty barriers. "The Real" show will air today on FOX but here is a little clip from the show when producers surprised April with an appearance from Winnie Harlow (link) Check your local air time here.
Bookmarks for your weekend. 11.09.2015
This week we share with you an article, a video and a website. First, let’s take a look at avatars - those mental images of an ideal self that can take a heavy blow from vitiligo, a theme examined in this excellent article by Rich Cohen in the New York Times. It’s well worth a read.
Something else that’s a must-see is the recent TEDx talk by Michaela DePrince, which recounts her incredible life journey from an orphaned ‘devil’s child’ in Sierra Leone to star ballerina.
Larry (a.k.a Spotty) King has recently launched VitiligoMatch to help the vitiligo community. This social site is a place where people with vitiligo and their friends and supporters can chat, exchange photos and generally ‘feel at home’. Make sure you take a look.
What is one thing you wish others could understand about living with vitiligo? 10.09.2015
Help us answer this question on our Facebook page and your response could feature on The Mighty – the website that finds strength, joy and beauty in disability and disease. Feel free to include a photo of yourself with your comments. If you’re not on Facebook, simply send us an email at email@example.com.
Research Study Participants Needed in Baltimore, MD 10.09.2015
In this study, researchers are going to evaluate the efficacy and safety of narrow-band UV phototherapy in the treatment of vitiligo as well as impact on quality of life. Study participants must be over 18 years old and seeking treatment for vitiligo located on both sides of the body. Participants will receive
- Free NB-UVB phototherapy treatments three times per week for six months.
- Questionnaires on how vitiligo affects the quality of your life.
- Small skin biopsies of your skin.
Principal investigator for study is Ginette Okoye, MD, Assistant Professor, Director of Ethnic Skin Research Program, Johns Hopkins University. ClinicalTrials.gov Identifier NCT02506101. For more information, please call 410-502-SKIN or email firstname.lastname@example.org
FAQ: Why clinical trials are needed? Follow this link to find out more about clinical trials and why they are so vital.
Office closed for annual vacations. 07.08.2015
Please note that our NY office will be closed for summer holidays from August 10th. We will continue to receive email and voice messages but may not respond immediately. Regular office hours will resume on Monday, August 31.
Report on the X Master Class in Harbin, China 05.08.2015
Our 10th Master Class was held under the presidency of Professor Xing Hua Gao, MD, Chairman and Professor of Department of Dermatology, No.1 Hospital of China Medical University. European and Chinese guidelines were reviewed in fine detail. Unlike the straightforward European treatment approach, the Chinese consensus pay special attention to all factors that may influence the disease activity, treatment outcome and overall health and wellbeing of the patient. Read more
Brazilian folk medicine for vitiligo treatment investigated. 23.07.2015
Brazil not only has one of the world’s highest levels of biodiversity, but also it has an under-used repertoire of plants with potential medicinal and economic value. Ethnopharmacological information represents a great shortcut in the search for new effective therapies. We investigated the activity of leaves and flowers of Pyrostegia Venusta in order to support its use in traditional medicine for vitiligo treatment. Read more
Review of the current vitiligo research. 21.07.2015
Our free quarterly review of the latest in vitiligo research is now available for download. Forty six papers published between early April and end of June 2015 were thoroughly reviewed, summarized and referenced in 10 pages for your convenience. Start with Highlights or Download now.
New FAQ post: how to get insurance coverage for vitiligo treatments? 21.07.2015
Most of health insurance companies will initially reject claims for vitiligo doctor visits or phototherapy treatments but with enough efforts you can have a substantial part of related expenses covered by insurance. Read more
500,000 petitions! 16.07.2015
World Vitiligo Day 2015: over 500,000 petitions! A heavy box with more than 10,000 leaflets is on it's way from campaign headquarters in Shenyang (China) to our office. Huge thanks to Prof. Xing-Hua Gao and Prof. Yan Wu and their amazing team of doctors and volunteers for helping us to accomplish this ambitious task. Read report and see photos from celebrations in China here.
World Vitiligo Day 2015: above expectations! 26.06.2015
Thousands of ardent volunteers raised awareness for vitiligo on the streets and in the media on June 25, 2015, in addition to 30+ major hospitals receiving scores of vitiligo patients and holding education events around the world.
World Vitiligo Alliance 25.06.2015
At a recent meeting in Vancouver (Canada), leaders of vitiligo support organizations from 5 continents established a World Vitiligo Alliance, and invite leaders of other organizations to join. This is a major development in vitiligo area and more details will be released soon at www.worldvitiligoalliance.org
In the photo, from left to right: Jean-Marie Meurant (AFVitiligo, France), Ogo Maduewesi (VITSAF, Nigeria), Dr. Maya Tulpule (Shweta, India), Dr. Adrian Mar (Vitiligo Association, Australia), Yan Valle (Vitiligo Research Foundation (USA)
Happy WORLD VITILIGO DAY! 25.06.2015
As the World Vitiligo Day begins in the East, we receive first reports and photos from this global awareness campaign. In China, hundreds of vehement volunteers spread raise awareness for vitiligo in addition to 12 major hospitals receiving many patients. In Italy, 15 Dermatology Departments are already opened for free consultation with vitiligo patients, and Marie Claire Magazine published a special article on vitiligo.
This photo received from celebrations in Shymkent (Kazakhstan) by Dr. Aliya Kassymkhanova and colleagues at the 'Vitiligo School' meeting. In Brazil, a team of Prof. Cunha and 50+ volunteers are getting ready to join the action in just a few hours.
As the World Vitiligo Day approaches... 20.06.2015
MYSTERY EXPLAINED: From the very beginning of 25June.org campaign it's counter was set at a number of 1,177 so we could add signatures collected by Ogo Madueswesi through Petitions24.com in the year 2011. However, we never added those signatures. Recently, we updated the counter with the actual number of signatures collected through 25June.org. We’ll add those from the first petition (1,415 until today) and printed leaflets on the top in the next few days. Download stats from the earlier campaign (pdf) or check the current number of petitions collected.
Vitiligo group leaders meet in Vancouver, Canada 13.06.2015
International Dermatology Patient Organization Conference is the first ever conference dedicated to the patient leaders committed to run patient support organizations in the area of dermatology. It is held alongside the World Dermatology Congress in Vancouver, British Columbia, on June 11-13, 2015. Vitiligo group leaders from Australia, France, India, Nigeria and USA discussed education, awareness, advocacy, research and fundraising matters today.
June is declared as Vitiligo Awareness Month in Georgia 09.06.2015
This year, non-profit organization Vitiligo Bond will celebrate its 5th anniversary as vitiligo awareness month in Georgia. Special thanks to Nathan Deal, Governor Of Georgia, who have recently confirmed his commitment to raising awareness for vitiligo. Natasha Pierre McCarthy, founder of Vitiligo Bond, and Congressman Hank Johnson have also requested a national proclamation from President Obama. For more details, visit Vitiligo Bond website: www.vitiligobond.org
Vitiligo Mission: An Appeal from IADVL 05.06.2015
We all know the significance of Vitiligo in our society - Omar Khayyam's statement that "Black dot on white skin is a blessing, but a white dot on black skin is a curse" still holds good. Patients undergo untold misery, face continuous social stigma and suffer cosmetically, psychologically and socially. Continue
JUNE declared as Vitiligo Awareness Month by the Governor of Massachusetts 04.06.2015
VITFriends is proud to announce the receipt of a proclamation from Governor Charles D. Baker and Lt Govenor Karyn E. Polito proclaiming JUNE as Vitiligo Awareness Month.
As a reminder, join VITFriends for a rally on the steps of the MA State Capitol on June 25th at 12:30pm. We are excited for the very first time to share our stories, journeys of struggle and triumph with the people and the leaders of this great state. Bring your lunch, bring your friends and family, bring you signs, saying VITILIGO, etc. and banners of support for this community of people, who for too long have gone unnoticed.
Vitiligo Advanced Technology Summit 25.05.2015
The 2015 Vitiligo Advanced Technology Summit was held on May 23, 2015 in Zheng Zhou (China), superbly organised by Mr.Ye, the President of the China Vitiligo Hospitals. Over 150 experts attended the mixed format of the Summit, with lectures and following group discussions in a specially designed educational area. Read more
An update from IX Class on Vitiligo in Sofia 24.05.2015
Over 170 participants have attended this key regional meeting for the latest achievements in the field of pigmentary disorders of the skin. A practical demonstration of melanocyte transfer was given by Prof. Davinder Parsad, read more.
Vitiligo Treatment Guidelines from Prof. Stanimirovic 17.05.2015
An excellent presentation of Vitiligo Treatment Guidelines was offered by Prof. Andrija Stanimirovic during recent Master Class in Croatia. Vice-president of the Master Class and President of Croatian Vitiligo Association, Prof. Stanimirovic reviewed five treatment algorithms suggested by American, British, European and Japanese vitiligo specialists, and shared guidelines from Croatia that were introduced by his team in 2014. Download PPT presentation.
World Vitiligo Day 2015: a quick update 12.05.2015
Hopefully, you are one of nearly half a million people to have signed our petition to the UN Secretary General, asking for June 25th to be officially designated World Vitiligo Day (WVD). The more names we have, the stronger we are – so thank you for your support. Many of you ask questions about WVD, so here is a rundown of the most common queries.
Report and photos from Vitiligo Master Class in splendid Split. 03.05.2015
Our special thanks to Professors Mirna Šitum and Andrija Stanimirovic for an exceptional organization of VI Master Class On Vitiligo and Pigmentary Disorders in Croatia. Nearly 100 doctors from across the Balkan region spend weekend with us to learn the best practices in vitiligo management. Full report and photos.
Stats from the World Vitiligo Day campaign 28.04.2015
The World Vitiligo Day campaign is gearing up. This year’s headquarters are in China, under the presidency of Prof. Xing Hua Gao, Chairman of Department of Dermatology, No.1 Hospital of China Medical University. Next year, the campaign headquarters will be in Prague, the beautiful capital of the Czech Republic, and a leading candidate to host the World Dermatology Congress in 2019.
We are nearing our target number of petitions for the UN. As of April 28, 2015 we have collected 486,991 online signatures. That's enough to fill up seven National Football League stadiums! (Wikipedia)
Here are stats representing breakdown of signatures by country to this date. If you haven't done this yet, please go to www.25June.org and sign the petition.
Latest in vitiligo research: 59 papers reviewed. Useful hint for patients. 28.04.2015
Our free quarterly review of the latest in vitiligo research is now available for download. Fifty nine papers published between January and March 2015 were thoroughly reviewed, summarized and referenced in 10 pages for your convenience. Patients, take note of an effectiveness of the home-based phototherapy. Start with Highlights or Download now.
Polypodium leucotomos as an adjunct treatment for vitiligo. 19.04.2015
The patent on a Polypodium Leucotomos, plant extract derived from types of South American fern, has just expired. This opens up the market for new products for vitiligo based on healing powers of the nature, coming soon. Indigenous people of rainforest have long used the plants to treat and alleviate symptoms of vitiligo and other autoimmune disorders. Read more in FAQ section.
VRF - VSI collaboration discussed at the AAD annual meeting 26.03.2015
Yan Valle, VR Foundation CEO and Jackie Gardner, Executive Director of Vitiligo Support International, have discussed the current state of vitiligo affairs and collaboration at the AAD Annual Meeting in San Francisco. Continue reading
Latest in vitiligo research: 51 papers reviewed and summarized in 9 pages. 06.03.2015
Our free quarterly review of the latest in vitiligo research is now available for download. Fifty one papers published between October and December, 2014 were thoroughly reviewed, summarized and referenced in nine pages for your convenience. Start with Highlights or Download now.
Casting call announcement for vitiligo photo-shoot 26.02.2015
Take part in research study on compassion-focused therapy. 20.02.2015
Take part in a research study and have the chance of winning a £50 Amazon voucher! Researchers at the University of Sheffield are looking for volunteers to test whether online self-help is useful for people who experience psychological distress in relation to their skin condition, such as vitiligo.
If you are aged 16 or above and are interested in taking part, check out this website: http://pcp12mh.wix.com/compassion-and-skin
This study has received ethical approval from the Department of Psychology ethics committee at the University of Sheffield (UK).
World Vitiligo Day: we stand united on June 25th! 13.02.2015
The General Body Meeting of Indian Association of Dermatologists, Venereologists and Leprologists (IADVL), the largest representing society of Indian Dermatologists, has approved today the changing of IADVL VITILIGO Day from May 19th to 25th June. On behalf of WVD Steering Committee, we thank IADVL President Dr. Deepak Parikh, and Dr. Davinder Parsad, President of the World Vitiligo Day 2014 that was held in Chandigarh, for their invaluable support and contribution to the campaign.
Warning for Gingko Biloba users 04.02.2015
Four major retailers in the US accused of selling fraudulent and potentially dangerous herbal supplements, including Gingko Biloba often prescribed to vitiligo patients. Investigation by New York State attorney general found that as many as a 45% of herbal supplements tested did not contain the plants listed on their labels — only cheap fillers instead. In the study, nine of the tests revealed no Gingko Biloba plant DNA but only allium, rice, spruce, and asparagaceae. Read the full story in the New York Times.
In Memoriam: Charles Townes, inventor of laser, dies at 99. 29.01.2015
Charles Hard Townes, a professor emeritus of physics at the University of California, Berkeley, who shared the 1964 Nobel Prize in Physics for invention of the laser and subsequently pioneered the entirely new industry, died on Jan. 27.
Townes was 35 in the spring of 1951 when he found the solution to a longstanding problem, how to create a pure beam of short-wavelength, high-frequency light. That revelation – not much different from a religious revelation, Townes believed – eventually led to the first laser, a now ubiquitous device common in science, telecommunication, entertainment and medicine, including phototherapy for vitiligo. Throughout his life, Townes maintained an interest in the intersection of science and religion.
VR Foundation had the privilege of inviting Charles Townes to the Roundtable On Vitiligo in Kitzbuhel, Austria in 2012, watch the video here . We wish his family our sincerest condolences at this time of loss, and we hold Professor Townes, one of the greatest scientists of the twentieth century, in fond and respectful memory.
Master Class on Vitiligo in Croatia 27.01.2015
Program “Innovative Therapy in Dermatology” updated. Organized under the presidency of Professor Mirna Šitum, M.D., Ph.D. by Croatian Dermatovenerological Society of the Croatian Medical Association, Croatian Vitiligo Association, VRF and WHA.
VRF turned to crowdfunding to fundraise. 27.12.2014
As with other non-profit organizations, the VR Foundation always received far more applications than it has funds to support. Even if a project fits within our funding criteria and priorities of the VRF, the Foundation may still be unable to provide a grant. In response to this situation, we launched a ‘crowdfunding’ campaign because we see it as an great opportunity to raise much-needed funds to meet the needs of vitiligo researchers around the world.
Master-Class section updated 17.12.2014
Latest in vitiligo research 03.11.2014
Our free quarterly review of the latest in vitiligo research is now available for download. Fifty nine papers published between July 1 and September 30, 2014 were thoroughly reviewed, summarized and referenced in ten pages for your convenience. Start with Highlights or Download now.
Drug development news 29.10.2014
Australian company Clinuvel have announced that their treatment known as SCENESSE® (Afamelanotide 16mg) was approved as a treatment for the debilitating genetic disorder Erythropoietic Protoporphyria (EPP) in Europe. Despite not being currently approved as vitiligo treatment, this drug may also be the last treatment option for some vitiligo sufferers. Read more >>>
A remarkable disruptor, Chantelle is on stage at O2 Arena. 10.10.2014
"Remarkable Disruptors" is the theme of the inaugural TEDxTeen London that focuses the conversation on teens and their power to change the world. The motto of the conference is that "If you're good enough, you're old enough." There are literally thousands of ambitious teens striving to make their way in this super fast digital world and change it for good, but only few make it to TEDx Teen. Chantelle Brown-Young will be opening TEDx Teen talks with her incredible vitiligo story.
Heads-up for the VRF Newsletter, September 2014 15.09.2014
Vitiligo stats: a tidal wave 15.09.2014
Nichola Wong from UK has shared with us the recent stats of the number of search requests for "vitiligo" on Google from August 2012 through July 2014. Year-toYear, we see a steady rise of interest towards vitiligo, with an average of 368,000 monthly searches coming from the US (28%), Brazil (7.6%), UK (5.8%), France (4.8%), Mexico (4.2%), and the rest of the world (49.1%)
IRS Form 990 is now available 11.09.2014
VR Foundation is commired to transparency in its financial reporting as mandated by our mission and by our Board of Directors. Here is our most recent IRS Form 990 for the financial year 2013. The IRS Form 990 is the annual tax return that nonprofits in the US submit to the Internal Revenue Service. It provides detailed information about a nonprofit’s income, expenses and operational activities, allowing donors to evaluate how effectively the nonprofit is performing.
We’ve always believed the most efficient way to finding a cure for vitiligo is by directing as much grants funding as possible to the best and most innovative researchers. Not only do these grants promise to advance the understanding and treatment of vitiligo, but they are critical to attracting and retaining the interest of top scientists. Here is how we spend our donor dollars.
Dermaroller for vitiligo therapy? 10.09.2014
In response to several inquiries about use of micro-needling devices for vitiligo therapy, Dermaroller and the like, we have added a new item to our FAQ section.
Guide: How To "Whitelist" Our Communications 02.09.2014
Newsletters and regular emails may accidentally end up in the Spam folder in your email program. Oddly enough, this happens sometimes even if you have been exchanging emails with the sender before.
In the never-ending war between spammers and email services, you and us are accidentally caught in their crossfire. The result is that providers filter out email that you specifically ask to receive, such as our newsletters. Some can be very aggressive and mark "good" mail as "spam" without even letting you know about this.
It's a shame to inconvenience you with this, but the spammers leave us no choice. After you subscribe to our newsletter, we recommend you take the following steps to ensure that you actually will receive it.
Overview of Vitiligo Research April - June 2014 25.08.2014
Published today. Thirty six PubMed records were found by our Chief Scientific Director Dr. Korobko to be relevant and of interest, and were included into this quarterly overview. The review includes sections on epidemiology, comorbidities, quality of life, vitiligo triggers, new case reports, new clinical studies and trials, analysis of mechanisms of vitiligo pathogenesis, genetic studies, candidate biomarkers, mechanisms of treatments, methodological advancements and novel treatment modalities.
Chantelle Brown-Young aims at America's Next Top Model 25.08.2014
The recently started 21st installment of ANTM has one special reason to tune in every week: a beautiful, striking model with vitiligo is among several contestants to compete for the honor of being next "It Girl" in the modeling world. Chantelle Brown-Young from Toronto has radically changed the show that was essentially the same for the last 11 years, which gathered just over 1 million viewers on the first season night. We hope Chantelle is crowned the Queen of the Catwalk and America's Next Top Model. Cycle 21 airs Mondays at 9 p.m. EDT on The CW. You still have plenty of time to catch up with the show, and in the meantime check out Instagram for Chantelle's flawless photos. Read more about Chantelle >>>
Vitiligo news: a major change in India 17.08.2014
In June 2014 an integrated global pharma company from India Dr. Reddy’s had reportedly acquired rights and re-launched lotion for vitiligo called Melgain. Generic name is Decapeptide, using the Basic Fibroblast Growth Factor or bFGF, a substance the body naturally produces for maintaining the structure and function of melanin producing cells. Repigmentation is attributed to the growth of melanocytes in depigmented hair roots in the vitiligo patch and also the skin directly surrounding the patch. Patients generally receive better and faster repigmentation, especially when bGFG is used in combination with other medical treatment options. The average cost in India is $12 for 5mg (5mL.)
As if in response to this move (or vice versa, we are not really sure on this), US-based company PhotoMedex has recently announced bringing its laser treatment technology VTRACK to India on a massive scale. Company's local subsidiary has set up five certified clinics in Hyderabad on a franchisee basis, and look forward to adding more in the next 4-5 years. It's new campaign "Live Clear. Live Free." drives awareness of the standard of care for vitiligo, attracting dermatologists to vitiligo discipline nationwide. The company stated full benefit of the vitiligo treatment would take 10-20 sessions. VTRACK uses UVB range of 280 – 315 nm. Each sessions costs Rs 2,400 or approximately $40.
Once Vitiligo Devil Child, now a rising star 14.08.2014
A lot has happened since we decided to take a quick summer break... DESIGUAL, a fashion chain from Spain, has signed Chantelle Winnie Harlow, the world's first top model with vitiligo, as the face of its autumn-winter 2014 campaign.
New York came into a public spotlight when awesome members of support group led by Valarie Molyneaux decided to bring the vitiligo story into the streets of Harlem. In the engaging, moving, and unforgettable memoir Taking Flight, Michaela DePrince shares her dramatic journey from an orphan "vitiligo devil child" in Sierra Leone to becoming one of world's most exciting rising ballet stars.
Writer & director Nicola Wong from UK has started the trans-media project on vitiligo, to inspire and raise awareness through the power of cinematograph. Stay tuned for more news to come!
Our office will be closed for vacations until August 15th 29.07.2014
Please be informed that our NY office will be closed for summer holidays from August 1st through August 15th. We will continue to receive email and voice messages but may not respond immediately. We thank you very much for your cooperation and understanding.
Clinuvel receives takeover offer from a notorious short seller 29.07.2014
Clinuvel Pharmaceuticals, drug developer for skin diseases from Melbourne, has received an unsolicited $95 million takeover offer from a controversial biotech company Retrophin, soon after sudden passing of Clinuvel's long time director Jack Wood.
On behalf of VRF management, we offer our sincere condolences to Jack's wife and family. Jack Wood was a remarkable person with a vision, big heart and brilliant sense of humor. Clinuvel is awaiting clearance from the European drug regulator for the use of its drug Scenesse in the treatment of a rare skin disease Erythropoietic Protoporphyria and potentially, in vitiligo.
Once a notorious short seller with loud public pressure, Reptophin's CEO Martin Shkreli now aims at drugs for ultra-rare and dangerous conditions. Clinuvel has appointed an advisory firm in the defense against the hostile offer.
World Vitiligo Day recognized by the Governor of Massachusetts 29.07.2014
During the 6th annual conference, Mrs. Valarie Molyneaux (photo), CEO and Founder of VITFriends support group from Boston, MA has opened a letter with official proclamation from Governor of Massachusetts recognizing the World Vitiligo Day. For full conference report please visit Facebook page.
World Vitiligo Day 2014, a truly global event. 23.06.2014
This year, the campaign is coming of age as a truly global event. World Vitiligo Day 2014 was the biggest yet, with a vast array of awareness and support events spanning the globe. Celebrations run across the world the entire week, to accommodate multiple presentations, speeches and other events aimed at the patients and healthcare community.
Flash news update: clinic & blog in Boston, FB group from Belgrade 20.06.2014
Vitiligo Clinic & Research Center at UMass (Boston, MA) has a new website.
Dr. John Harris started new blog on vitiligo: "I am a physician-scientist who focuses my clinical and research efforts on vitiligo, and therefore I think about this disease a lot – all the time, in fact. Therefore I thought it would be helpful to share my thoughts with others who are interested in vitiligo as well, particularly the patients who suffer from it and their loved ones."
Slobodanka Mijatovich has set up Vitiligo Support Group in Serbia (Facebook page) with a clear vision to raise awareness and educate community on the latest advancements in vitiligo.
IX Master Class on Vitiligo and Pigmentary Disorders 10.06.2014
will be held in Sofia, Bulgaria on May 23-24, 2015 under the chairmanship of Prof. Mira Kadurina M.D., PhD. DSc., the Head of Department of Dermatology and Allergology of the Military Medical Academy.
World Vitiligo Day awareness video 10.06.2014
For World Vitiligo Day 2014, we encourage all those who wish to film themselves dancing to Michael Jackson's "Black or White" to upload their videos to YouTube. We will be cutting them together to make a community video for World Vitiligo Day. You can make your videos anywhere, with anything: in the street, near your favourite landmark, in the garden, with your phone or camera. It's all awesome :)
So please get out there, show your support for World Vitiligo Day, and join the effort to create more awareness.
Vitiligo: Who, What, Why? Chantelle explains. 01.06.2014
Chantelle Young, is one of finalists on the forthcoming series of the modelling talent show the Next America's Top Model, to compete for the honor of being next "it girl" in the modeling world. Chantelle (also known as Winnie Harlow) is the first in the show's history to suffer from vitiligo, an under diagnosed skin disease that affects nearly 100 million people worldwide.
Take part in an international study to find vitiligo genes 28.05.2014
Prof. Spritz has put together an international team of scientists to find the genes that cause vitiligo. Researchers don’t know what most of these genes are yet, and so we need additional patients and families to narrow the search. Find out how to take part in this study >>>
World Vitiligo Day T-shirts update 23.05.2014
As of today, we have run out of the World Vitiligo Day T-shrits. Nearly 1,500 donated T-ees were mailed out to vitiligo support groups around the world in the last three weeks.
But don't worry, folks: you can get your own T-shirts with this inspirational logo. Just download the original graphics files from here (Adobe PDF or Corel CRD ) and bring them to a print shop nearby or online, or even better - give them a link to our website and they would know what to do!
Lecture on Vitiligo News in 2014 23.05.2014
A beautiful 'Vitiligo Spokesmodel' lands spot on America's Next Top Model 08.05.2014
Chantelle Brown-Young has now 107,000+ followers on Instagram as the America's Next Top Model show date gets closer. Also known as Winnie Harlow, she was recently invited back to her high school to do a motivational talk on the discrimination she faced. We will post more updates as the story develops >>>
VIII Master Class website 05.05.2014
is now up and running at www.vitiligoistanbul.com
This Master Class will offer colleagues from across the world an ideal environment to learn about recent advances, future developments and prospective research opportunities, and to exchange ideas and experiences in the field of pigmentary disorders. Read message from Congress President Prof. Sibel Alper, MD >>>
In memory of Prof. Antonio Salafia 28.04.2014
A long-standing Member of the VRF Scientific Advisory Board, Prof. Antonio Salafia passed away suddenly on Saturday, April 26, 2014 at the age of 73. He loved practicing dermatology, was deeply devoted to his patients, and greatly respected by his friends, colleagues and co-workers. >>>
New FAQ item: Ginko Biloba for vitiligo therapy? 24.04.2014
Ginko biloba extract seems to be a simple, safe and fairly effective therapy for arresting the progression of the vitiligo.The ease of taking an oral pill, the relatively low cost, and the low frequency of adverse reactions with Ginko biloba make its use for vitiligo tempting, but it is recommended that use ginkgo in the management of vitiligo should be monitored by a health care practitioner. Read FAQ for more details >>>
Welcome to Vitiligo Support Group in Kazakhstan 22.04.2014
Alma Aimoldina, a master student from Astana Medical University, Department of Dermatovenereology, has traveled 750 miles from the capital city Astana in the north of the country to Almaty in the south to attend the V Master Class on Vitiligo. Today, Alma has established the first Vitiligo Facebook group in Kazakhstan. Read more >>>
Report on V Master Class on Vitiligo in Almaty-Shymkent 18.04.2014
In a beautiful hall of the Asfendiarov Kazakh National Medical University there was the first part of the Fifth Master Class on Vitiligo, followed by the second part at the Regional General Hospital in Shymkent, the capital of the most southern province of Kazakhstan.
Quarterly review of vitiligo research 10.04.2014
Association Française du Vitiligo annual meeting 08.04.2014
Board members, staff and over 100 supporters of the Association Française du Vitiligo gathered in Paris for an annual meeting on April 5, 2014. During this year’s meeting, the AFV President Mr. Jean-Marie Meurant, an exemplary leader of the vitiligo patient association (read more >>>)
A beautiful vitiligo model Chantelle is making history. Cast your vote! 28.03.2014
Chantelle Brown-Young, vibrant fashion model from Canada, vitiligo spokesperson, aspiring journalist and TV host, is making history in the latest installment of the popular reality TV show America's Next Top Model that will air this August. Chantelle, who models under the name Winnie Harlow, is also the first ever show finalist with vitiligo. Read full story by Janet Chin, HighOnTunes Media (link)
Visit www.cwtv.com/thecw/antmvoting today, on March 28, and April 1, 2014 to cast your vote for Chantelle and to show your support for this awesome young woman.
New grant for research in vitiligo announced in Denver 28.03.2014
We are pleased to announce that John E. Harris, M.D., Ph.D., a distinguished vitiligo investigator from University of Massachusetts, was awarded with a grant by Dermatology Foundation to continue research on Skin-Resident Memory T Cells in Vitiligo. Last year, VRF has supported John Harris' project that aims to test some new substances for vitiligo treatment using his unique mouse model of vitiligo. If successful, this could be a critical step towards developing a new approach to vitiligo treatment.
Vi-Tee contest winner 18.03.2014
Congratulations, Olumide Omololu and Ocube Interactive from Lagos, Nigeria!
Not only have you won complete bragging rights, but you have also won a prize pack of 10 Tees! The VRF Board has received 12 designs for the Vi-Tee contest and narrowed them down to two for a final vote. All the entries were amazing but unfortunately there was only one winner… Huge THANKS to everyone who participated in design contest. Stay tuned as the 1,500 T-shirts get manufactured and printed by the generous donor and we distribute inspirational Tees among vitiligo support groups before the World Vitiligo Day.
Our grants for vitiligo research in 2011-2014 15.03.2014
T-shirt contest finalists 11.03.2014
Earlier this year, the VRF announced a unique giveaway in which we asked community to design the T-shirt that will be handed out to vitiligo support groups before the World Vitiligo Day. We have received twelve T-shirt designs and have narrowed it down to the final two. Let’s take a look at the finalists >>>
Stunning New Top Model Has Vitiligo 27.02.2014
Chantelle, whose real name is Winnie Harlow, describes herself as a "vitiligo spokesmodel." She's walked Toronto Fashion Week's runways and has many editorials to her name. "A lot of people have a story or a background," she says, "but mine is painted on my body."
Most read articles in photodermatology: vitiligo 26.02.2014
According to MDLinx Dermatology, among this week's 10 most-read articles by US physician subscribers are two supported by the VRF:
2. Novel topical cream delivers safe and effective sunlight therapy for vitiligo by selectively filtering damaging ultraviolet radiation.
5. Acridone acetic acid, sodium salt, as an agent to stop vitiligo progression: A pilot study.
VII Master Class on Vitiligo in Istanbul 25.02.2014
Dear Colleagues, on behalf of the VRF, WHA, local Organizing Committee and the Scientific Committee, it is my great pleasure and honor to invite you to Turkey for the 7th Masterclass on Vitiligo and Pigmentary Disorders to be held in Istanbul in November 2014. <...> Prof. Sibel Alper, Congress President
Ironman Kyle McElroy preps for Coeur d'Alene and fundraising for vitiligo 10.02.2014
Vitiligans are invited to take part in an art project 10.02.2014
Stephanie Corne, a New York-based artist and our active supporter, is inviting vitiligans to take part in the art project on February 16th from 2 pm to 6 pm.
She is looking for individuals with vitiligo, pigmentation, scar or burns as well as anyone without any skin blemishes who are interested in expressing how they feel to come and have a free portrait taken. This is a part of the art-series from the last year, and hopefully a candidate art-project for the Vienna Art Fair sponsored by Mr. Dmitry Aksenov.
For details, please contact Stephanie
VIII Master Class On Vitiligo in Amritsar, India 07.02.2014
On behalf of the organizing committee, it is a special privilege and pleasure to invite you to VIII Master Class in Vitiligo and Pigmentary disorders along with 2nd PIGMENT Meeting, to be held on November 28-30, 2014. Details » » »
VRF receives a generous gift in-kind for the Vi-Tee fundraiser 07.02.2014
VR Foundation is pleased to announce a generous gift in-kind from the Russian fashion producer and retailer TVOE, valued at $15,000. The gift represents 1,500 to-be-customized T-shirts for our first fundraiser, the Vi-Tee campaign. VRF hopes to turn a basic fashion element — the T-shirt — into a charitable work of art. Read more » » »
Vitiligo clinical trials page updated with nine new entries. 07.02.2014
Thirty six vitiligo clinical trials in sixteen countries are currently underway, including 2 new in China, 1 new in Japan, 3 new in India, 1 new in Iran, 2 new in the United States since the last update in October 2013. Check out the details.
VRF receives IMCAS educational award 06.02.2014
VRF Chair of the Board Prof. Torello Lotti, MD won the Educational Project Award & Prize at IMCAS 2014 for the project "World Vitiligo Day." IMCAS started in 1994, in Paris, France, as a congress dedicated to plastic surgeons and dermatologists. It has become one of the most important international courses dedicated to Aging Skin Treatments since then. This year it welcomed more than 4,000 participants from 85 countries.
Climatotherapy at the Dead Sea for Vitiligo. 31.01.2014
Dead Sea climatotherapy is a successful treatment option for vitiligo, but the mode of action has escaped definition, and no standardized treatment protocol has been developed so far. Our research continues.
Quarterly Review of the Latest in Vitiligo Research 22.01.2014
V Master Class on Vitiligo in Kazakhstan 20.01.2014
Our Vth Master Class to be held on April 14-17, 2014 will provide participants with an overview of vitiligo, including its diagnosis, treatment options, dealing with complications and co-morbidities, and the latest research in the field. It is envisaged that a total of four educational modules will address interesting, relevant, and complex issues covering the entire depth and breadth of vitiligo. Throughout the program we will use clinical based studies to highlight current treatments and to combine theory and clinical practice.
Awesome stats from 2013: enough people to fill 7 major football stadiums! 16.01.2014
Last year, our presentations on vitiligo were in top 2% of the most viewed materials on SlideShare, a popular document sharing platform. Lots of people downloaded our free Vitiligo Q&A in 7 languages from our website, too. Altogether, they would fill a large NFL stadium!
Thank You and Happy Holidays! 26.12.2013
As always, we look forward to keeping you up-to-date on our momentous progress and research throughout 2014. We have some exciting projects ahead that we are eager to share with you - so stay tuned for more from us in the new year.
Vitiligo at the ISD Congress in Delhi 08.12.2013
To facilitate the exchange of information among the global community of dermatologists, the XIth Congress of International Society of Dermatology was held in New Delhi between December 4-7, 2013. A number of oustanding speakers discussed the state of the art in vitiligo management, such as Professors Jana Hercogova, Torello Lotti, Paulo Cunha, Koushik Lahiri, Somesh Gupta, Kanika Sahni, T Salim, Davinder Parsad, among many. Yan Valle, the VR Foundation’s CEO, gave a detailed presentation on our multidisciplinary approach to an expedited development of drugs for the treatment of vitiligo.
Networked BioBanking and Economics of Non-profit Drug Discovery - live presentation 02.12.2013
Tech In Media 2013 forum participants in Moscow have shared their vision for the future of education, innovations, IT and biotech. TechCrunch’s Editor At Large, Mike Butcher, talked about the enormous sea-change in tech startups that is sweeping across the Central and Eastern European region. Read more
Two new Vitiligo Support Groups in Brazil 22.11.2013
- Belo Horizonte City, coordinated by TÂNIA NELY ROCHA, MD (email@example.com)
- Sao Paolo, coordinated by RIVELINO AIELLO RITTO, MD (firstname.lastname@example.org)
Quarterly Overview of the Latest in Vitiligo Research 19.11.2013
IV Master Class on Vitiligo in Tbilisi, Georgia 18.11.2013
VRF Presentations in Italy and China 18.11.2013
Throughout the year, the VRF has been delivering a series of workshops, lectures and presentations that focus very much on the seen and unseen challenges of the non-profit drug development for vitiligo and other neglected diseases.
Master Class in Sao Paolo, Brazil 29.10.2013
Vitiligo Presentations in Moscow 16.10.2013
Prof. Konstantin Lomonosov, MD will be presenting "Pathogenesis and modern therapies in vitiligo" during the III Russian Forum "Dermatovenerology and cosmetology: a synthesis of science and practice" to be held in Moscow on October 16-18, 2013.
Vitiligo at EADV Congress in Istanbul 04.10.2013
The new vitiligo consensus nomenclature and implications for clinical practice were presented by Prof. A. Taieb during symposium on vitiligo at 22nd EADV congress in Turkey. Presenter highlighted headlines for disease management with specific focus on the latest consensus, supported by a certain group of European researchers. We will keep you updated on this subject as soon as more hands-on, practical recommendations emerge from this consensus group.
First vitiligo support group meeting in New York city 01.10.2013
Speakers: Prof. Nanette B. Silverberg, MD, and Dr. Carmen Grau, PhD. Date: Monday Oct. 7, 2013 at 6:30 – 8:00 p.m. Address: Roosevelt Hospital, Conference Room B, 2nd Floor, 1000 Tenth Avenue, NY, NY 10019. To reserve a seat, please send your name and number of attendees to email: email@example.com
Be a part of NYC’s first Vitiligo Support Group!
Vitiligo Electronic Health Record staged roll-out begins soon 17.09.2013
October the first will see the launch of CloudBank, the world's first Vitiligo specific health IT system, allowing patients and dermatologists to connect and work together to track disease progression and treatments, gain better treatment results, and take an active role in the fight against vitiligo.
VRF presentations in Almaty, Kazakhstan 08.09.2013
Presentations by Chief Scientific Office Dr. Igor Korobko and CEO Yan Valle at the 50th annual conference of the Almaty State University of Continued Medical Education with updates on the latest in vitiligo therapy development.
New Publications and Quarterly Review 06.09.2013
A lot of what we write about on the website is technical: review of the latest news from scientific frontiers, new compound's effectiveness in mice, clinical trials and so on. Plenty of people read these posts, but what people really like to read about are stories with a wow factor - “Wow, that's great!”
Sorry, folks, but not today. We have updated our PUBLICATIONS page with new scientific papers and uploaded our QUARTERLY REVIEW for April - June 2013.
CloudBank: patient portal Beta 2 testing 02.09.2013
Vitiligo Q&A is now available in German 02.09.2013
Vitiligo funding and Philanthrocapitalism 25.08.2013
We have all had that nagging feeling of “how can I possibly make a difference with my small donation when the problems are so many?” at least once. Even Bill Gates says that his Foundation´s billions are nothing compared to the magnitude of health problems they are trying to address.
New Patient Engagement Tools For Pre-Clinical R&D and Medical Practice 22.08.2013
Vitiligo Music: turn the volume UP! 22.08.2013
The famous "vitiligo kid", an American rapper and singer Krizz Kaliko says on vitiligo "F*ck Cedric The Entertainer" to 3 million daily visitors of ThisIs50 online channel.
More about Krizz Kaliko and his Vitiligo album that was charted on several Billboard charts here
Health Unlimited on Vitiligo from K24 14.08.2013
Winners of the VRF China Special Call For Grants 2013 04.07.2013
Vitiligo: Q&A is now available both online and for download 04.07.2013
130,929 Signatures to date 04.07.2013
Online community acts like a megaphone to call attention to the needs of estimated 100 million people suffering from vitiligo.
World Vitiligo Day campaign supercharged by 130,929 users in order to reach a scale that could make a difference. Add your voice at 25June.org to help us reach 500,000 signatures before the end of 2013.
E-book "Vitiligo: What's True, What's Not" 01.07.2013
now available at Amazon.
World Vitiligo Day Official Proclamations 01.07.2013
by Michigan Governor Mr. Rick Snyder and Mayor Mr. Dave Bing.
We cannot thank everyone enough for their time and efforts in putting all of this together. What an amazing week this has been – right here in Detroit, the symbol of American renewal and determination! Read more
World Vitiligo Day updates are coming 27.06.2013
We apologize for the delay with the World Vitiligo Day updates because Delta Airlines has lost our baggage first on the way to Detroit with all promo materials, and then on the way back to New York, again. We are currently in recovery mode and will be back with WVD news report soon. Stay tuned!
In the meantime, check out a quick WVD update here
World Vitiligo Day goes live on Fox TV 27.06.2013
Morning show at WJBK Fox 2 Detroit on June 25, 2013. Lee Thomas, Dr. Marsha Henderson and Yan Valle are talking live about World Vitiligo Day campaign.
Read the full story
World Vitiligo Day in Kazakhstan 22.06.2013
Dr. Aliya Kassymkhanova has sent us photos from the 3rd Euarasian Congress of Dermatology and Cosmetology and "Vitiligo" school in Shymkent meetings, where they held presentations and lectures on vitiligo.
See more photos here
VRF granted 501(c)3 non-profit status 19.06.2013
100,037 Petitions signed to date, 19.06.2013
or 20.01% of the target number, a tremendous 500+% increase over 2-week period! A big thanks goes out to everyone who support the World Vitiligo Day.
Add YOUR voice, because it truly matters! Click and sign » » »
June is officially a Vitiligo Awareness month in Georgia 15.06.2013
thanks to a Georgia-grown start-up organization Vitiligo Bond and its CEO Natasa Pierre McCarthy. Full story
World Vitiligo Day 2013 campaign launched in West Africa 12.06.2013
T-Shirt Challenge 03.06.2013
Annual Master Class on Vitiligo is coming to Sao Paulo, Brazil. 27.05.2013
Researchers Stop Vitiligo Progression 24.05.2013
World Vitiligo Day is coming to Detroit 07.05.2013
Newsroom Archive 11.03.2013